Abstract

The subjective experience of dementia for lesbian, gay and bisexual individuals is largely absent from the extant literature. This study aimed to explore what it means to experience dementia in this context given the documented psychosocial influences facing this population. A second aim was to develop understanding of these experiences within dyadic relationships. Ten semi-structured interviews were conducted with lesbian, gay and bisexual individuals with dementia and people with whom they had a significant relationship. Interpretative Phenomenological Analysis of transcripts identified three superordinate themes reflecting characteristics of participants’ experience: Duality in managing dementia; Giving yourself away vs. holding onto yourself; and Relationships as sheltered harbours. Ten subthemes indicate processes these individuals adopt to adjust and make sense of their experience of dementia. This included decisions around concealment, ensuring safety and the promotion of personhood and couplehood. In line with findings for heterosexual couples, partners had an important role in maintaining the identity of the person with dementia. Results suggest additional and distinct challenges, including experienced and perceived discrimination and heterosexism. In response to these conditions, interviewees worked to resist a ‘double stigma’ of dementia and sexuality. Findings indicated areas of improvement for dementia services, including training in inclusive practice.